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Chelee · 08-10-2006, 10:21 PM

Barbara, The problems I have had with this would take me far to long to explain. Thats half the problem. I realize my posts are TOO LONG.

Since they are so long, I am sure some skip over parts of it & don't understand whats all went on. (I don't blame them.) lol But, that being said, your right, it WON'T help if the rad onc damages anymore of my lungs. Thats the problem here.....If I had NOT questioned him...and STOPPED him...I would of already HAD radiation. He was just going to do it WITHOUT LISTENING to me about how BAD my lungs are. Thats when I had my pulmonary doctor step in.

So in all fairness...none of this is because my rad onc doc was concerned. He could of caredles. My case is very complex as you stated, but the rad onc doc didn't take it seriously & I could tell, that scared me! But my OTHER doctors involved sure did. When they got WIND of this THANKS to me seeing my pulmonary doc...thats when they all started looking into this and STOPPING HIM until they all put their heads together.

This Rad oco doc is younger & seems to think he is pretty smart & doesn't need to listen to anyone. I KNOW my body better then anyone...and one thing I know is how HARD it is for me to breath as is. When he said he would hit another 12% or more of lung...that would do me in...my pulmonary doc agrees. One last thing...what scared me the most is I had a MRM (modified radical mastectomy) and if he had HIS way...he "was" going to radiate over my incision across my entire chest! That would of certainly killed me. Now the only dicussion they are having is IF they can do the axilla area and up by the collar bone....and its not looking very good I am assuming since I have not heard back from them yet?

I would LOVE to give credit where credit is due...but in my case I can't do that.

They KNEW how complex my problem was when this was FIRST presented to the tumor board...but yet they wait till now to even discuss it and its only because I my pulmonary doc is very concerned about me. They just run everyone through this place like its a mill. This is NOT a production line...they need to treat us all on an indiviual basis.

But thanks so much for your support Barbara, and wishing me well.

Its much appreciated. I know my story is hard to follow...there is so much to it unfortunely. But I appreciate everyones help and support. Everyone here is so great.

Chelee

08-10-2006, 10:21 PM	#5
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Barbara, The problems I have had with this would take me far to long to explain. Thats half the problem. I realize my posts are TOO LONG. Since they are so long, I am sure some skip over parts of it & don't understand whats all went on. (I don't blame them.) lol But, that being said, your right, it WON'T help if the rad onc damages anymore of my lungs. Thats the problem here.....If I had NOT questioned him...and STOPPED him...I would of already HAD radiation. He was just going to do it WITHOUT LISTENING to me about how BAD my lungs are. Thats when I had my pulmonary doctor step in. So in all fairness...none of this is because my rad onc doc was concerned. He could of caredles. My case is very complex as you stated, but the rad onc doc didn't take it seriously & I could tell, that scared me! But my OTHER doctors involved sure did. When they got WIND of this THANKS to me seeing my pulmonary doc...thats when they all started looking into this and STOPPING HIM until they all put their heads together. This Rad oco doc is younger & seems to think he is pretty smart & doesn't need to listen to anyone. I KNOW my body better then anyone...and one thing I know is how HARD it is for me to breath as is. When he said he would hit another 12% or more of lung...that would do me in...my pulmonary doc agrees. One last thing...what scared me the most is I had a MRM (modified radical mastectomy) and if he had HIS way...he "was" going to radiate over my incision across my entire chest! That would of certainly killed me. Now the only dicussion they are having is IF they can do the axilla area and up by the collar bone....and its not looking very good I am assuming since I have not heard back from them yet? I would LOVE to give credit where credit is due...but in my case I can't do that. They KNEW how complex my problem was when this was FIRST presented to the tumor board...but yet they wait till now to even discuss it and its only because I my pulmonary doc is very concerned about me. They just run everyone through this place like its a mill. This is NOT a production line...they need to treat us all on an indiviual basis. But thanks so much for your support Barbara, and wishing me well. Its much appreciated. I know my story is hard to follow...there is so much to it unfortunely. But I appreciate everyones help and support. Everyone here is so great. Chelee __________________ DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes. Rt. MRM on 1-3-06 -- No Rads due to compromised lungs. Chemo started 2-7-06 -- TCH - - Finished 6-12-06 Finished yr of wkly herceptin 3-19-07 3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07 9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV. 9-28-09 Loading dose of Herceptin & started Zometa 9-29-09 Power Port Placement 10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head. 11-19-09 RT. Femur surgery - Rod placed 12-7-09 Navelbine added to Herceptin/Zometa. 3-23-10 Ten days of rads to RT femur. Completed. 4-05-10 Quit Navelbine--Herceptin/Zometa alone. 5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy. Results to FISH was unsuccessful--this happens less then 2% of the time. 7-7-10 Recurrence to RT axilla again. Back to UCLA for options.